Some Ideas for Doing Good, Better

          Joining a new board has gotten me fired up about how badly non-profit boards need members with disabilities! If you’re on a board that doesn’t have 20% of people with disabilities on it, read on and maybe you’ll get fired up too!

             Charity to people with disabilities dates back to Biblical times, but philanthropy involving meaningful input from those served is a recent phenomenon. The demand for “nothing about us without us” is part of the disability rights movement that has been called the last civil rights movement. Major civil rights legislation for the one out of five of us with disabilities – the Americans with Disabilities Act is only thirty years old.

             Recently I joined the board of Benetech, a software for social good nonprofit located in Silicon Valley.  One of their main products is Bookshare, a collection of almost a million e-books for blind and other print-disabled folks. I’ve relied on books from Bookshare for my professional work as a clinical psychologist, as a writer needing to know what’s out there in my genre of memoirs, and as a retiree joining as many book clubs as I can find and glorying in recreational reading.  It’s my joy to be able to support the organization financially but also to add the perspective of someone with lived experience of information access barriers to board discussions.

In addition to the usual steep learning curve of joining any new board with its cast of characters, informal board norms and lingo, I have to articulate my access needs.  I ask for information electronically ahead of time instead of relying on the presenter of a PowerPoint to read it aloud as they present it. The software the board uses is somewhat accessible, but not completely, so we have to figure out how to get me info like what folks are saying in the Zoom chat, which I can’t listen to at the same time as I listen to people talking at the meeting.  I need people to say their names when they speak, at least for a couple meetings, so I can get voices hooked to names in my aging brain.  Staff and board are willing to make these accommodations, but they are awkward and forgetful at times like anyone exercising new skills.

I look forward to when we get beyond people verbally pointing out that they’re accommodating me as in “Kathie, I’ll read this out loud for you” and just do it.  We aren’t to the point yet that I get a laugh when a speaker says “Can everybody see line 3…” and I say “No.” I also hope to develop the relationships with board members and staff to not have them apologizing profusely for a misstep. I’d rather just point it out, they say “oops”, acknowledge discomfort and then go on to try it differently.  I know from my previous 72 years of life experience as a blind person in a sighted world that we’ll usually get to comfortable interactions, but it will take time and work from both the sighted and blind sides of the interaction.

            If this board is like other boards I’ve been on, very few board members have much experience with people with disabilities. They exhibit unintentional ableism in word choices, and saying things like “I don’t think of you as disabled” (meant as a compliment.)   For me it’s a balancing act to decide when to educate about ableism and micro-aggressions (like not providing materials ahead of time even when asked repeatedly to do so) versus just letting it slide.  I will work to get the board to consider board and staff training on ableism and to have another person with disabilities join the board so I’m not the only one doing the educating and representing consumers.

             Eventually, I hope board members think about access and universal design, and question themselves about who’s not at the table and why, wherever they go. When we go beyond just providing lots of books for lots of print disabled folks to having those deep discussions of what information is needed and how technology can help provide it, we’ll be advancing equity, diversity and inclusion in real ways.

 See you in the board room!

            For further information, consider checking out some of the following resources:

Job Accommodation Network  for reasonable accommodation policies and ideas

National Center for Disability and Journalism and National Disability Rights Network  guidelines for language and respectful communication

Listen to podcasts like “Power not Pity” and read books like the New York Times anthology About Us edited by Peter Catapano or   Alice Wong’s anthology Disability Visibility to learn about the lived experiences of the one out of five of us who have disabilities.